Most of Newfoundland and Labrador without access to fetal alcohol assessments: advocacy group

Katharine Dunbar Winsor is fasdNL’s only part-time staff person and co-ordinates most of the organization’s initiatives, such as its virtual support networks for families affected by fetal alcohol spectrum disorder (FASD). - Contributed

fasdNL has asked government for three-year funding commitment

ST. JOHN'S, N.L. —

If it’s suspected a child in this province has fetal alcohol spectrum disorder (FASD), chances are they will need to leave the province to get an assessment and diagnosis, according to a provincial advocacy group.

People living in the Labrador-Grenfell Health region have access to a multidisciplinary team that can assess people age eight to 18, but anyone who lives outside that region cannot avail of those services.

“Unfortunately, for somebody living in St. John’s, or Grand Falls-Windsor, or Corner Brook – you’re not able to, say, ask for a referral to the Labrador-Grenfell Health team,” said Katharine Dunbar Winsor of the Fetal Alcohol Spectrum Disorder Newfoundland and Labrador Network (fasdNL).

“Oftentimes you might find a pediatrician or a physician who might say, OK, FASD is a possibility, but we can’t really make a formal diagnosis because there’s no team to assess.”

Dunbar Winsor said some families with the financial means will leave the province to get those assessments and a diagnosis.

“However, that results in a very equitable issue then in who can access diagnosis or assessment and who can’t.”

Recent studies indicate the prevalence of FASD in the general Canadian population is four per cent, according to fasdNL.

"FASD is still quite stigmatized, unfortunately, and so, oftentimes parents and caregivers are reluctant to speak openly about FASD being a diagnosis or a suspected diagnosis.” — Katharine Dunbar Winsor

Dunbar Winsor said it wasn’t always so difficult to get a diagnosis for FASD in the province. Dr. Ted Rosales was a pediatric geneticist who specialized in FASD, but since he retired in 2015 there has been no one diagnosing and no resources for a multidisciplinary team, Dunbar Winsor said.

The few people who can get access to an assessment in the province and get a diagnosis then struggle to access supports such as respite care, intervention and services, she said.

“It’s very much an isolating process. FASD is still quite stigmatized, unfortunately, and so, oftentimes parents and caregivers are reluctant to speak openly about FASD being a diagnosis or a suspected diagnosis.”

Part of the work fasdNL does is offer virtual support for parents and caregivers across the province. The organization also delivers FASD 101 training to groups such as teachers, social workers and people working in corrections.

Dunbar Winsor said those programs will be “completely hindered” without core funding from the provincial government.

The organization has requested a three-year funding commitment from the province. Dunbar Winsor said the group is hopeful they will get positive news about funding before the provincial budget is handed down sometime this spring.